My School Years

Suddenly discovering in your thirties that you are in fact on the autistic spectrum is really something to come to terms with, not least because you not only begin to understand yourself for the first time, but you begin to work through a re-writing of you entire history. For me one of the most eye opening moments must have been reading through all my old school reports.

I remember school as a difficult time because I remember feeling different to the other girls throughout my school years. One of my earliest memories involves glancing up at birds in the trees that had caught my attention one afternoon during our lunch break. They fascinated me and I became completely absorbed as I watched them fly through the blue sky and land in the trees. The sound of all the children around me completely fell away and although I was surrounded by children running here and there playing their games, all I knew was the birds and the sky. I was about six years old. When I looked down from the sky to the playground I found it empty and silent. Though it seems as though only a few moments had passed while I had been watching the birds, in fact time enough had passed for the bell to ring, all the children to line up and return to their classes. I was all alone, left, forgotten about. I had to bang on the door for them to let me in, bewildered as I was about what had happened.

As my school years went on I felt no more included than I was in that forgotten playtime. It hurts me now to read the reports that clearly indicate a child that needed help, but was offered none.

‘She is sometimes rather dreamy, but will persevere to finish the task in hand. She is something of a ‘loner’ in the class and seems to prefer playing with the boys or by herself.’ Head teacher, aged 6.

‘Occasionally Sarah seems to go into a world of her own. She is rather disorganised, is constantly losing things and feeling annoyed with everyone and everything around her.’ Class Tutor, aged 10.

‘Sarah’s standard of work varies greatly. It can be of a very high standard but can also be “slapdash” presumably according to her degree of interest. She has settled down considerably this year. There have been very few outbreaks of socially unacceptable behaviour.’ Class Tutor, aged 11

‘Her reading, surprisingly, shows evidence of difficulty when encountering new words. This seems to be more to do with difficulty in decoding rather than lack of vocabulary.’ English Teacher, aged 11

‘Sarah’s contribution in class is variable. Sometimes she seems to go off in a dream and has no idea as to what is going on around her.’ Social Studies, aged 11

‘Sarah’s progress has been slow this half year due to the fact that she is late to most lessons.’ Sports teacher, age 12. This is because I struggled with the simple tasks of undressing and dressing myself due to my lack of perception about how my body relates to its surrounding environment (poor proprioception). This difficulty was never recognised by my teachers. I was simply labelled ‘slow.’

To me these comments scream autism and dyspraxia. The fact that I was a ‘loner,’ I was only good at what interested me, I played with the boys more than the girls, I often became so absorbed in my own world that I became oblivious to what was going on around me, I at times exhibited ‘unacceptable behaviour’ and was unable to break down words to read them if I was not already familiar with them. This is a problem my 7 year old son also has.

I have Aspergers, but Aspergers was not a diagnosis until 1994, when I was already 14 years old. When I was a six year old, 10 years old, 11 years old, struggling to fit in and work my way through mainstream education, autism was defined by a lack of language development and a below average intelligence. Clearly I did not fit this criteria. Yet teachers expressed concern over my behaviour. They knew I was capable of more than I was achieving, but they did not help me, they did not alert my parents, they simply labelled me as slow, lazy and told me I should try harder.

Even though I know that those who taught me could not have known that I was on the autistic spectrum, albeit at the high end, I still can’t help but feel angry and cheated, because the help I needed was simply not there for me.

Today it is my mission to ensure that my son has all the help and opportunities that I can possible give him, and he will grow up knowing that he is not a ‘loner’ with ‘unacceptable behaviour.’ He is a unique individual, with exceptional abilities.

Don't take my Autism away from me.

For the most part telling people I have Aspergers has been a really positive experience. My friends have accepted this and understood it and they GET me now much better than they did before. I can be myself, and mostly it’s all good. However,  I’m also raising an autistic son, and I basically live in the world of special needs and of course this means that I’m exposing myself to a whole world of different opinions, and some of them offend me.

The bottom line is that I’m on that magical thing we call the Autistic Spectrum. I always have been and I always will be. What’s more, so is my father, who I love very much, and so is my son, who is one of my two favourite people in the whole wide world. When I think hard about who I am, what I want in life, what it means to be me, and what it is I like most about myself, I can’t separate any of it from my Autism ‘symptoms.’ I am who I am because I am on the spectrum

So when I hear people talk about curing Autism, or talking about it as though it is a separate entity from those who ‘have’ it, I can’t help but find it offensive.  If a person hates Autism…does that me they hate me? I wouldn’t be who I am without it. And neither would my son….or my father. And some of the things I love most about all three of us, are traits we have because we’re autistic.

As a child I had an Autistic father who scared me with his meltdowns and always told me the harsh truth because he doesn’t believe in anything  else. I seriously struggled through the process of growing up because I always felt different and didn’t understand why I wasn’t fitting in. As a parent I am often frustrated and defeated as I try to negotiate the minefields of raising an Autistic child of my own.  I fully understand the issues and the difficulties of Autism. But would I change a thing about the three of us? Not a chance. Because then we wouldn’t be us. I have an intelligent supportive father and an extremely loving son with an amazing sense of humour. For myself, although I drive people around me nuts and often feel lost an out of control, I wouldn’t trade my veracious appetite for knowledge and studying for anything.

I wish people would stop viewing autism as something that should…or even could!....be taken away from an individual. It’s not a problem, it’s not an illness, it’s just a different way of being that is not compatible with mainstream culture. I do not want a cure, I do not want a solution, all I want is acceptance and understanding. For those that offer me that I have an enormous amount of gratitude. For those that think that Autism is something to be fought, or cured, please think about what you’re saying around those for whom it is simply a way of being.

To Me Autism Is...

Today is Autism Awareness day and April is Autism Awareness month. Everyone who is autistic is different and views the world in a different way, so in light of this, and to spread the awareness, this blog post is all about what autism means to me and the world that I live in. 

To me Autism is…

…feeling like a stranger in a foreign country where everyone is speaking a different language to me.

…being irritated by so many little noises all around.

…having an incredible ability to focus on studies that expand my mind and can open new doors.

…becoming so absorbed in things that I’m interested in that the smallest distraction can make me want to explode like a volcano.

…talking incessantly about the same things all the time.

…needing to plan every activity to the smallest detail and then follow the plan EXACTLY!

…losing friend after friend because I don’t know how to hold on to them.

…bluffing my way through conversation because I don’t always understand what people are saying.

…not understanding jokes

…feeling left out

...feeling left out

…feeling left out

…being extremely organised

…valuing friendships and appreciating the smallest kindness or feeling of inclusion because it’s so much harder for me to earn it.

…suffering from anxiety without even knowing why

…achieving the award of Young Animal Welfare Person of the Year 1991 at age 11 due to the focus I placed on running my own animal charity from the age of 9.

…finding it extremely difficult to shut my brain down to sleep, because it’s so busy.

…being bad at eye contact when I’m feeling uncomfortable

…being over the moon with the self-checkouts we now have in the supermarkets because I don’t have to talk to anyone when I do my shopping anymore

…having no sense of how my body relates to the world around me and constantly bumping into things, and dropping things, and nocking things, and falling over!

…having a strange accent that is mostly influenced by the TV I watch and which often causes people to think I am foreign.

…living in the fantasy worlds I find through the TV and in books, because they are more real to me than the real world. I would honestly live in them if I could and resent anything that takes me away from them.

…finding doing normal everyday things like housework, washing clothes, getting up and going to work, doing my work, and so on all a REAL effort, because I’m literally having to pull myself out of my head and remind myself about what actually needs to be done. I could live in my head for hours and hours, without actually doing anything, and be perfectly happy. I find the world extremely irritating, because it doesn’t let me do this.

…losing control over the smallest things because the pressure has built and built and built until it can’t be contained anymore and watching from inside in horror at my behaviour and wondering why no one understands me.

…being able to understand my son and the way his brain works – this is the greatest gift of all.

Would I ever change the fact that I’m autistic? NO! I wouldn’t be me if I wasn’t autistic and I believe I get more out of life because of the focus I have on the subjects that I’m interested in. I am also blessed to be surrounded by a lot of people who support me, love me with my quirks, and make this life one well worth living.

The Difficulty of 'Hello'

It has been a while since my last blog, but here I am back with more to say about the confusing place that is my brain. I’ve talked about issues with socialising before, but I’m aware that there is one crucial part to socialising that I didn’t touch on before – the initial greeting. Through an awful lot of observation and practise, I have by now managed to master the art of small talk, I can participate in conversations with people quite well providing I’m interested in the subject and I’ve learnt to pepper my talk with thoughtful questions about the other person, but one thing that still fills me with dread, and which I don’t think I will ever feel comfortable with, is perhaps the most simplest interaction of all – saying hello!

The main occasion that this simple interaction fills me with dread, is when I am simply walking past someone, such as a stranger on the street, or a colleague in the office. As we approach each other I feel awkward and panicky as I desperately try to decide how I’m going to handle the situation. What I want to do is keep my head down, completely avoid eye contact and fail to acknowledge their presence, staying nice and safe in the comfort zone that is my own head. However, I know enough to know that doing so would appear rude. So a million things run through my mind: shall I make eye contact? shall I say hello, or just smile? do they expect me do anything, or can I get away with pretending I haven’t seen them at all? Usually I panic through these thoughts until the last possible moment, and then force myself to make eye contact and either smile or say hello – and I hate having to do this. If possible I will whip my phone out and pretend I’m doing something on it to avoid the awkward dance that I don’t really know the steps to, or I’ll even take a longer route somewhere to avoid people.

The same can be said for the coffee place in work. It’s the same meaningless niceties of greeting and negotiating space with other people that makes me extremely uncomfortable. I will sit at my desk for an hour or more wanting a drink, but having to wait until the coffee area is clear of people so that I don’t have to worry about what kind of greetings they might expect of me. I’m always mortified if I head there when it’s empty and someone else gets there before me.

I also struggle with saying hello when I initiate a conversation with someone else. There have been times when I’ve gone to talk to people and launched straight into the subject I want to discuss only to be quickly interrupted with a sarcastic ‘Hello Sarah!’ at which point I realise I’ve failed to follow the expected rules of conversation. Sometimes the act of saying hello just seems pointless to me when there are other more important things to get to. 

It’s hard to explain why this is so difficult to me, but I think it’s because it’s such a small subtle interaction that I just don’t understand how to do it, or if I’m doing it right, it’s causing me so much energy in the thought processes going into it, that it makes me feel extremely uncomfortable and awkward. It’s also true that the fleeting eye contact required is no small part of why it makes me feel uncomfortable. I put a lot of thought into regulating eye contact as it is, but the small amount required when greeting someone in passing means that it’s very difficult for me to gauge the appropriate amount to be made.

My son seems to have similar issues, and I’m currently trying to get him to say hello and goodbye to people, which he usually does without making any eye contact. I confess I sometimes use him as a way to deflect the responsibility of saying it myself. If I look like I’m focussing on getting him to say hello and goodbye I am looking at him, not the other person, which is more comfortable for me, and I don’t have to say anything to them. The truth is I could quite happily dispense with saying hello to people as the practise often makes me feel so uncomfortable that I can’t see myself ever feeling at ease with it.

Sensory Processing Disorder - SPD

When I first started researching the problems my son was having I began with looking at Sensory Processing Disorder (SPD). His problems ultimately proved to extend far beyond those of SPD, but it was as good a place to start as any to learn more about how people on the Autistic Spectrum experience the world, for although everyone who has SPD is not autistic, everyone who is autistic has some degree of SPD.

There are many different ways in which it can present, but the most common way seems to be hypersensitivity. The wrong level of noise can push me over the edge and there have been occasions when both the children have been screaming and a sense of panic has built up in me and I have literally put my hands over my ears and joined them in the screaming, leaving my ever suffering husband to calm all three of us down.

I am also often extremely bothered by noises that may only be small or far away, and when I complain to other people about them they just don’t know what I’m talking about. They can’t hear the noise, either because their ears are less sensitive, or because they are doing a better job of tuning out the irrelevant. I find it harder to tune out unimportant noises and therefore find it extremely difficult to watch the TV if there is even the faintest source of noise in the room, or to sleep at night if there is any noise at all. Likewise a lamp on in the corner of my view makes it impossible for me to watch the TV with dimmed lights as it’s too much of a distraction.

In the same way, when I am focused on doing something that has my attention, I can’t stand it when someone comes up and touches me, because it pulls my attention away. A touch that may be welcome and comforting at the right moment, can be torturous at the wrong moment. My poor husband has been shrugged off and pushed away many times when he has tried to offer a simple hug. Sometimes I like it, sometimes I simply can’t cope with it. In general I’m not a hugging person and the people closest to me know this. I recently tried to offer my mother a hug to comfort her because our dog had just passed away. I knew it was the appropriate thing to do, so even though it didn’t feel comfortable to me to do it, I offered it for my mother. I couldn’t take it to the point of just stepping forward and giving her a hug, so I stood with my arms open expecting her to step into my space and understand that I was offering a hug. I was so awkward about it and it was so out of character that she actually asked said ‘What are you doing?’

Sometimes if too many of these little sensory irritations come together -  a bright light, a distracting noise, an unwelcome touch from someone -  it can all build up and create a sense of panic in me that very often will bring me to the point that the smallest thing will send me into a meltdown. I think this is why meltdowns often seem to be about something small. They’re not, they’re about a whole culmination of factors with one last straw that’s finally triggered it off.

Another way in which SPD affects me is in my extreme clumsiness. This is due to vestibular and proprioception problems, which basically means that I am not very good at gauging how my body relates to the world around it, and how to move effectively. I trip and fall, I spill drinks, I nock the edge of things on shelves when I am trying to set them down, I drop things and fail to pick them up again…and again…and again. It’s as though things just slip through my fingers! As a child I was always the last to be picked for sports because of my complete lack of coordination, and complete inability to hit a ball or throw it in a net. It got to the point when I would forge letters from my mother to get me out of PE lessons.

I don’t suffer from SPD as severely as many others on the spectrum do. It doesn’t cause me pain as it does to some, but it does cause me an extreme amount of irritation. The noises and the lights, and feeling crowded by other people makes me feel panicky, and the never ending clumsiness makes me feel as though I can’t trust my own body. For me I don’t believe these problems are insurmountable, but they are still an important part of my Aspergers puzzle.

Mind-Blindness

Last week my husband and I started The National Autistic Society Early Bird Plus programme. It’s a 10 week course designed to educate parents of children diagnosed on the spectrum so that they can understand Autism and their children better. Of course we are taking this course because our six year old son is Autistic, but my husband came out of the class saying that he had found it more helpful in understanding me. The one thing that we both picked up on that helped to explain the way my brain works is mind-blindness. I was familiar with the concept before, but this is the first time I have heard its name.

Mind-blindness is the inability to understand that other people think and feel differently to the way we do, and that people don’t automatically know what is going on inside your head. This can cause a number of problems when it comes to interacting with other people and I think that it’s been a very important factor in the breakdown of many of my friendships over the years.

If I’m upset about something, whether I’m with my friends or not, I always expect them to know that I’m upset and I then become frustrated and angry with them when they don’t rush to support me. It could be that I haven’t seen or spoken to them for a week, that I haven’t told them that I have a problem, and that they have no way of knowing I need them at all – but I will still not understand why they aren’t calling me or coming to see me. Time and again I have been deeply hurt by a friends apparent neglect, when in fact they don’t have a chance to start with, because of course they’re not mind readers.

For the same reason I know that relationships that I thought were still strong have died while I wasn’t paying attention. Because I was still thinking about my friend, still caring about them, still nosing about their lives on Facebook, I still felt that the friendship was strong – but without making actual contact how were they to know I still cared? Unfortunately I have a specific problem with initiating contact with anyone, even my closest friends. I am much more likely to wait for a text, a phone call, an invitation, than I am to get in touch with them first. Eventually people must think that I have lost interest in them and no longer want to be friends. The result is that one day I turn around and realise that people I count as my closest friends aren’t even my friends at all anymore.

The inability to understand or accept that other people think differently to the way you do and can’t immediately understand what you want from them can also cause a lot of frustration. I have seen it in my son who will never tell you what he wants to do, but rather insists on asking people to tell him what he wants to do, and then becomes frustrated when they don’t know. Often he will say ‘Look inside my head and tell me.’ My husband has pointed out that I do much the same thing when I ask him to choose what we are to watch on TV, but then will become irritated at everything he picks until he picks the programme I want. If, god forbid, he settles on something that wasn’t my first choice, it’s likely to end up in me storming out of the room and giving up on an evening together entirely – because I’m angry with him for not automatically knowing what I want! For some reason I am unable to express what I want, I need him to arrive at the conclusion by himself.

It’s the same when I’ve arranged to do something with a friend and they ask me ‘what do you want to do.’ No one should ever ask me this, because the answer will always be ‘I don’t mind, you tell me.’ I usually do mind, but I will never under any circumstances make that decision unless I am with family.

Conversations can also be extremely frustrating, because the chances are I’ve already run over in my mind how I expect a given conversation to go. I’ve already played out both parts in my head, heard specific responses to what I’ve said based on how I think people should react. When I then carry out the actual conversation and the person I’m talking to reacts in their own way, and not the way I expected them to, I am extremely unsatisfied with the conversation and may even try to repeat it in the hope that this time I will get the response I’m looking for. I drive my husband mad with repeating the same thing again and again until he gives me the ‘right’ answer.

I think that mind-blindness is perhaps one of the leading factors in the feeling of isolation that I carry around with me constantly, because it makes it extremely difficult for me to understand other people and the way their minds work, and causes confusion, disappointment and frustration when they don’t understand me the way I expect them to. I am hoping that with my new understanding of this particular problem I can work on overcoming it, but I also know that although I have a voice that is extremely verbal and often doesn’t stop talking, I have another voice that is locked away inside my head talking away to an imaginary audience and there are some things that most people take for granted that I can’t do any more than I can fly.